Neuropathy still after 4 months gluten-free.. help

[Ennis-TX]

2 hours ago, Chris H said:

Sadly my nerve pain has gone back to where it was 9 months ago. With really slight numbness in my left toe. Since quitting gluten I haven’t felt the numbing of my toe. I’m getting a food intolerance test next Thursday. My diet is so strict I don’t know where I’m going wrong. But something is definitely affecting my nerves, not as bad as gluten does but it definitely affects them. I’m hoping it’s just a setback. Feel like I’m so close but so far away. 

My nerve issues come back with that slightly numbness with even the tiniest amount of CC, a whole foods diet makes it happen less often, and screening products I use seeing if they use shared facilities or if the company handles oats or gluten in ANY other product (bit of paranoia) I found a few other things.
Tiny microexposures (as I call them, not enough to flare gut issues but cause slight numbness) I have linked with heading to the grocery store (inhaled flour from that open aired bakery?) or not washing produce from said grocery store. Few times a shared facility issue, or a case of me not washing my hands before taking meds, mints, gum, etc.

The intolerance testing things are a bit wonky and not always accurate or used to be anyway. I went through all that stuff years ago and it was a waste of money. The list was hit and miss and I got a better idea by keeping a food diary and rotating foods off for a week then trying 1  day off for a few days and recording the issues. Takes forever but way more accurate. Go down to eating 2-3 foods only no spices, seasonings etc. the  do the changing 1 out or adding 1 in for a day. Lot less guessing.

[cyclinglady]

Have you ever had an MRI?  How is your spine?  A compression fracture can cause traveling nerve pain (like sciatica).  I had lots of numbness due to compression fractures (osteoporosis) due to undiagnosed celiac disease.  My pain and numbness eventually went away but can reappear when I use my back incorrectly.  

[Dee Dee L]

It’s been a while since this post. Just wondering if your neuropathy has resolved going gluten free. 

[clauren89]

Hi Lions31,

I am writing because I am experiencing very similar symptoms to yours as described in your previous post. I have been experiencing neuropathy (tingling, numbness, pins and needles) in my hands, arms, legs, feet and even face. The neuropathy moves around and seems to worsen if I'm sick or stressed. I have had weeks where it goes away or greatly improves. I have been gluten free for 6 months now and I'm still experiencing these symptoms. All my micronutrients have been checked and have since improved. My copper levels were low, however, since I've been supplementing it's gone up. I am also supplementing with magnesium, zinc, and iron. My PCP has ordered an MRI to rule out Multiple Sclerosis and referred me to neurology. Did your symptoms improve with time? Were you ever diagnosed with another disease? Any information or updates on your progress would be greatly appreciated! Has anyone else experienced symptoms similar to mine? What was your prognosis? Thank you! Any information is greatly appreciated! I too am frustrated and concerned. I have worked very hard to stay gluten free and I don't know why these symptoms aren't improving.  

[Sobiha]

I had this problem for years and in retrospect I realise that it was another symptom of celiac disease. After 10 months gluten free the symptoms are a lot better What I do find helpful for relief is magnesium spray oil.

 

 

[Scott Adams]

21 hours ago, clauren89 said:

Hi Lions31,

I am writing because I am experiencing very similar symptoms to yours as described in your previous post. I have been experiencing neuropathy (tingling, numbness, pins and needles) in my hands, arms, legs, feet and even face. The neuropathy moves around and seems to worsen if I'm sick or stressed. I have had weeks where it goes away or greatly improves. I have been gluten free for 6 months now and I'm still experiencing these symptoms. All my micronutrients have been checked and have since improved. My copper levels were low, however, since I've been supplementing it's gone up. I am also supplementing with magnesium, zinc, and iron. My PCP has ordered an MRI to rule out Multiple Sclerosis and referred me to neurology. Did your symptoms improve with time? Were you ever diagnosed with another disease? Any information or updates on your progress would be greatly appreciated! Has anyone else experienced symptoms similar to mine? What was your prognosis? Thank you! Any information is greatly appreciated! I too am frustrated and concerned. I have worked very hard to stay gluten free and I don't know why these symptoms aren't improving.  

Have you been diagnosed with celiac disease? If so, is your diet 100% gluten-free? 

The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.

Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.

 

 

 

 

[clauren89]

Hi Scott,

Thank you for your response. Yes my GI doctor did check my micronutrients. My iron and copper were deficient. Everything else was normal. Since then, with supplementation, my iron and copper have slowly improved. I have not had my vitamin D checked recently. Thank you for the suggestion. I may supplement with it even though there is some in my multivitamin. 

12 hours ago, Sobiha said:

I had this problem for years and in retrospect I realise that it was another symptom of celiac disease. After 10 months gluten free the symptoms are a lot better What I do find helpful for relief is magnesium spray oil.

 

 

Hi Sobiha, Thank you for your response! What is the name, brand, dose of the magnesium spray you use? Did you also have muscle fatigue? Did your neuropathy completely go away or just improve with time? 

[Sobiha]

1 hour ago, clauren89 said:

Hi Scott,

Thank you for your response. Yes my GI doctor did check my micronutrients. My iron and copper were deficient. Everything else was normal. Since then, with supplementation, my iron and copper have slowly improved. I have not had my vitamin D checked recently. Thank you for the suggestion. I may supplement with it even though there is some in my multivitamin. 

Hi Sobiha, Thank you for your response! What is the name, brand, dose of the magnesium spray you use? Did you also have muscle fatigue? Did your neuropathy completely go away or just improve with time? 

Hi Clauren Yes, I did have muscle fatigue. I also still have pain and tingling in my legs but it's something that is gradually improving along with my other symptoms. I use the magnesium spray twice a day when I need it but it says on the instructions you can use up to 10-20 sprays a day after the initial application. I buy it on line from Amazon..I don't think many  chemists in the UK stock it. The one I use is 'Better You'  body spray and it contains 200mg of magnesium per 10 sprays. I understand that magnesium is something that can be obsorbed through the skin which is better for some people as magnesium taken orally can sometimes cause diarrhoea.  I do hope you feel better very soon.

 

 

[oyea]

I was not diagnosed with celiac disease, but am gluten-intolerant. I have been gluten free for almost 10 years. In April of this year (2025), I got a steroid shot. I have been able to eat sourdough bread before with no problems. After the steroid shot, I developed gluten-neuropathy, and I could no longer eat sourdough bread, and now the neuropathy returns with small amounts of gluten.  I also get POTS (Postural Orthostatic Tachycardia Syndrome) when I eat gluten. My heart beats so fast in the middle of the night I can't sleep. I'm usually up for hours. 

[Scott Adams]

Welcome to the forum @oyea, have you ever been screened for celiac disease? You symptoms sound like they could be celiac disease related.